Transitioning to Middle Age With JIA

Read the first part of this article here.

As a child, my juvenile rheumatoid arthritis (now called juvenile idiopathic arthritis, or JIA) was extremely aggressive. Starting with my left knee, it attacked every joint in my body like a dog with a chew toy.

Virtually no bones were unscathed just a few years after my diagnosis at age 2. It affected my range of motion, my ability to walk, my strength, my endurance, and gave me soul-crushing pain that kept me up at night.

I wouldn’t wish JIA on anyone. Learning to cope and adapt to an unstoppable disease as a child was (to say the least) challenging. The treatments while I was growing up didn’t do much to stop the disease nor make me more comfortable. I had to mature emotionally and mentally beyond my years to manage my condition, the resulting disabilities, and the people around me confounded by a small (yet bossy) disabled child demanding inclusion and equitable treatment. Let’s just say I started shaking things up from a young age.

Being a child and young adult with JIA

As a child, my JRA was active, and nothing seemed to slow it down. By age 10 I was using a manual wheelchair at school to get between classes. Although I continued to walk short distances mostly at home, my wheelchair became my liberating mobility device. In college, I used a motorized wheelchair full-time and found I could truly get wherever I wanted (aside from staircases and inaccessible buildings) without pain and exhaustion for the first time in years.

Without any rhyme nor reason, after my hip and knee replacements when I was 15 and 16 years old, my RA grew relatively calm. I didn’t have the constant flares and loss of motion as in all the previous years. My pain was much less with these joints now replaced by metal. And I enjoyed a period of quiet and maintaining myself rather than actively trying to quell my disease.

Starting a new chapter

Looking back, it was a good time for living. I went to college. I graduated and started my career. I moved into my own apartment and lived independently. I traveled, had fun with friends, and didn’t have the constant worry of RA hovering over me.

As time passed, I could feel a change in my bones. I had more constant aching, less energy, and greater difficulty doing things. But I adapted and somehow kept up the pace. I met my husband, got married, adopted a cat, and started a new chapter of my life.

A change in my health

I was awoken from my RA slumber by a sudden, unexpected complication: an infection in my left knee replacement. It was probably lingering dormant for a long time, but it became urgent in a hurry. I had to have my knee removed, endure weeks of treatment with antibiotics, and then have a knee revision to replace it. It was a long and challenging time.

Thankfully my husband and family provided the support I needed to get through it successfully. I recovered my ability to walk short distances, though my left knee will forever be weaker. I was able to return to work and life, but yet I didn’t feel quite the same. Slowly, my RA had become more active, or I had acquired more damage, or some combination. I was now in a period of having to adjust to more damage, more limitations, and not having the ability to slide through on youthful energy.

Figuring out how to manage JIA in middle age

I thought I could use some expertise on adulthood to middle age with my condition, so for a short time, I saw a rheumatologist who specialized in JIA. But her focus was on children and not on adults diagnosed as children. She never could remember my name after several visits and didn’t seem connected to my plight and question: How do I adjust to middle age after having JIA most of my life? What do I need to plan for? What do I need to consider? I discovered that no one had these answers and that I would need to figure them out for myself.

In the meantime, I switched to a rheumatologist who cared about me and could remember my name (and my husband’s!). We tried different treatments that had become available — new classes of drugs that didn’t exist when I was younger. And we focused on what I needed to best maintain and monitor my health. Periodically, he prescribes tune-up visits to physical therapy, but I also maintain a daily exercise practice. I learned that, for my health, I need to pay attention to it every day. I have adjusted my habits and continue to fine-tune what is best to support my body and long-term health with JIA.

Hanging in for the long haul

Although my medication keeps down the inflammation, I still feel like I am in a more active phase of my disease. It’s probably a combination of activity and just many years of accumulating damage.

But all I can do is take whatever steps I can to manage it and hang in for the hopefully very long haul.

Do you have unanswered questions about entering middle age or older adulthood after a lifetime of JIA? Share an experience with us in the comments below.